MOURNING AT A WRITERS CLUB

“They tell you to keep busy or even to move out of your house. But in my experience, remembering the past makes hoping for the future possible.” --Alan D. Wolfelt “When you are sorrowful look again into your heart, and you shall see that in truth you are weeping for that which has been your delight.” – Kahlil Gibran The Central Lions Seniors Association has a Tuesday morning writers club. We members write at home and read our writing together. My companions in this endeavour are an eclectic lot. They write about all sorts of interesting things: a mistress of Louis XV; the rise and fall of polio; attending a Rose Bowl game in Pasadena; the extraordinary dietary preferences of cats. With a few exceptions I usually write about one thing: my experience of reconciling with grief. I’d like to write about other things. Maybe someday I will. Those who write about grief and bereavement tell us our society is intolerant of grief, impatient for us mourners to move on. With this in mind I tend to approach the Tuesday musings with a cautious suspicion. This is the first time I’ve gathered with the same writers, week after week, month after month. I notice, in their passing comments, that the members worry about boring each other. I worry about that too. Can the day be far off when a weary listener will jump up screaming: “All right already! Get over it!” Alan Wolfelt is a renowned authority on grief. He differentiates between grieving and mourning. He says grieving is what you feel on the inside. Mourning is the outward expression of the grief. Mourning is the thing you do in order to reconcile with grief. Spoiler alert! He says the grieving may never stop and the mourning can go on for a long time. Sometimes I ask myself why, when I was looking for activity to fill my time, I chose to join a writers club rather than a grief support group. The people in a support group would have been sympathetic. They would have expected expressions of mourning. The leaders would have encouraged me to share my pain. So why choose a writers’ club? The answer is: I didn’t compare the two. I joined a writers club because I like to write for fun. I figured I wouldn’t need a support group if I was having enough fun. I didn’t have any topics in mind. I expected to make a few people laugh a little. How was I to know that my journey through grief would show up in almost everything I wrote, exposing my pain to a captive audience of unsuspecting strangers? Alan Wolfelt writes that mourners have six needs: acknowledge the reality of the death; embrace the pain of the loss; remember the person who died; develop a new self-identity; search for meaning; receive ongoing support from others. From my perspective, some of these needs take care of themselves. Others are more dependent on action from me. Some people have trouble acknowledging the reality of death. I’m having no difficulty with this. We spent several hours with David’s body after he stopped breathing. I’ve got the paperwork to prove it and his clothes are long gone. As for the pain, it does not wait for my embrace. It holds me in a hammer lock. After 47 years of closeness in David’s company, it’s quite an adjustment to accommodate the fact that other people don’t need to remember him as often as I do. I am working on that. Things get even more complicated when it comes to developing a new self-identity and finding meaning. That’s going to take a while. As for seeking ongoing support from others, that support can come in many forms. It might come in the company of close friends, or in a group united by a common thread. Grief support groups unite around the process of mourning. Is there any reason to take it elsewhere? Grief, I have found, is more persistent and more flexible than you might think. It is welcome in a support group, but it doesn’t need one so much if you can find other places to take it. It will tag along wherever you choose to go. Writers clubs unite around the process of writing. With little choice but to listen, the members of our writers club have graciously made room for my pain. It holds its own alongside the fascinating variety of topics others bring. Mourning is not a stable condition. The commitment to present writing to a group on a regular basis has helped me shape it in ways that offer some encouragement to me and possibly some entertainment value to us all. Grief doesn’t have to show up at a writers club naked and shivering. You can dress it up in stories. In recent weeks I have written about choirs, marshmallow parties and even Groundhog Day. Each story holds some quirky progress, the documentation of something getting better. Writing is a solitary activity. You explore topics of your own interest. You make your own meaning in your own words. A writers club gives you the added benefit of group support when you share that meaning in your own voice. It disappoints me some to discover that I have no choice about whether to grieve. I expected to be moving on by now. But I do have some choices about how to mourn. Mourning is not so bad if you can make it playful. Playfulness is welcome among writers. Perhaps that is the best defense against the possibility that some fellow writer will stand up and shout: “Enough already! Get over it!”

HALFWAY THROUGH

“Hope is the ‘Yes!’ to life.” –Ronna Jevne I’m halfway through the 22 hours of training you have to take if you want to be registered as a volunteer at Pilgrim’s Hospice. They provide services to people who are dying. So far we’ve covered the organization chart, policies and procedures, confidentiality, communication skills, family dynamics, and psychological issues. “Aren’t you bored?” my friends are asking. “We know how you hate policies and procedures. With your training and experience you could teach communication or family dynamics or psychological issues. Don’t you have better things to do with your time?” “Actually,” I reply with a half grin, “I love it.” They are surprised. I am twice as surprised. “What are you learning?” they want to know. I’d tell them, but the truth is, it’s too early to say. How do you really know what it is that you are learning until you have learned it? I’ve been wandering for a year now in the wasteland of widowhood and retirement. I’ve spent a considerable amount of time trying to figure out which way to go. In retirement I would have spent more time with my husband. In widowhood I would have returned to work. But what are you meant to do when you’ve been married for a long time and now you’re not? What are you to do when you’ve been working for a long time and now you’re not? Pondering the problem, I thought of setting a goal. But I’ve never been much of a goal-setter. As a compromise, I settled for a guiding principle I would try to follow: Just say “Yes!” My friend Jennifer invited me to join her at a singing event. I said “Yes!” We chose seats for no particular reason and later discovered that the singers in the row ahead were from Canmore. They told us that they sang together in a Threshold Choir. “What on earth is a Threshold Choir?” we asked. “We sing at the bedsides of people who are dying,” they replied. “It’s an international organization with a lot of local choirs. We love it. If you are interested, you should look on the Internet for the contact information for the Edmonton choir.” Each Threshold choir has a name. In Edmonton we have the Voices of Compassion Threshold Choir. The representative I contacted was both friendly and guarded. She told me the choir meets weekly to practice as a large group. They send people to the bedside in groups of three. There were questions she wanted me to answer. “Would you be comfortable at the bedside of a dying person?” “Yes,” I said. “I’ve been there a few times.” “Can you sing your own part in a trio without any music in front of you?” “Yes,” I said. “I have done that.” “Are you willing to take the volunteer training program at Pilgrim’s Hospice?” Hmmm! I might have said “Yes!” to that. I don’t exactly remember. If I did, I wasn’t being entirely honest. My real plan was to join the choir, then convince them that I didn’t need the training. The process of joining took longer than I expected. It is a small choir, formed only two years ago. They have learned a few things along the way. They have learned to be cautious about taking in new members. I had made the call in May, but it was already late in October when they invited me to a practice, and I was busier by then. I probably would have said “No,” had I not been so much in the habit of saying “Yes!” Now it’s January. After one whole year of wandering in the wasteland of retirement and widowhood I look back in wonder at how time could drag so much and pass so quickly. I had imagined learning to feel at home here. I don’t feel at home. I want to, because it looks like I’ll be here for a while, maybe even forever, learning how to survive, learning how to thrive. To survive means putting up with things you don’t love, like being alone much of the time, and not having a structure that pulls you out of bed on the days when you don’t feel like getting up. To thrive involves learning to recognize love when you feel it—learning the difference between doing things you don’t love and making sacrifices when you love something. It’s a distinction that’s hard for a grieving person to make. You spend a lot of time in an emotional fog. You become accustomed to feeling miserable while doing things you used to love I do love singing in a Threshold Choir. I love the music, challenging yet simple enough to allow all members to sing at a bedside in three-part harmony without the aid of a book. I love the way I feel after practice—warm and relaxed, the way you might feel after a long warm bath. I loved our Christmas party, when we drank a little wine and gave ourselves fully to the delight of singing rock songs at the top of our lungs until we were hoarse. I love the closeness of it—the way everyone cheers when I arrive at practice later than usual. These people, strangers to me such a short time ago, are cheering because I am there. I love it so much that I never did ask if I could skip the 22 hours of volunteer training at Pilgrim’s Hospice. I was pretty sure they’d say no because it wouldn’t much matter how smart or experienced I am. I would still have to go through the process. In 2020 you can’t just march into an institution and ask if they have any dying patients you can sing to. Somebody has to recognize an appropriate situation and invite you in. There are no hoops to jump if you are invited by a family member. But institutions won’t invite you or recommend you to families unless you have been cleared for entry by a criminal check and met their requirements for volunteer training. So I registered for the training, fully intending to sacrifice 22 hours to the boredom of sitting through presentations of familiar content. The joke’s on me. The content is just what I expected it to be and I am not bored. Here in the unfamiliar wasteland of retirement and widowhood, with more time than I need and emotions I’ve never before experienced, I never know what to expect.

MARSHMALLOWS

In the months following David’s death our son Lawrence would come over to watch TV in my livingroom. There I would occasionally come upon him, sitting in the chairs his father used to occupy, reaching down the sides to retrieve long lost treasures trapped in the upholstery between the arms and the cushions. “What are you finding?” I’d ask. I would be thinking of spare change and other things that escape from pockets. “Marshmallows,” he’d reply. And sure enough, he’d come up with a dusty dried-up miniature cylinder that must have been there for a while. “To the garbage,” I’d say. “In a minute,” he’d reply. “There are only minis here. I guess when Dad was eating the bigger ones they never fell down that far.” I’ve always been drawn to the sensuality of marshmallows. It’s not just the sweetness that compels me. I love their shape, their ends, flat enough to stand for themselves, and their round, rollable bodies. A marshmallow is a silent treat. Ten of them could roll off the counter and you’d still be able to hear a pin drop as they hit the floor. They are pliable yet resilient. They know what shape they are supposed to be, and somehow they manage to hold themselves and be pillow-soft at the same time. They are simultaneously smooth and rough. Heat them a bit and they’ll stick your fingers together, strong as Crazy Glue. Run warm water over your fingers and the marshmallow glue will disappear completely. From the perspective of physical properties, a marshmallow is a wondrous thing. As I began thinking about writing this piece, I was surprised to find that the only thing I really knew about marshmallows was how to eat them. How were they named? How were they made? Fortunately, Wikipedia was there to save the day. There is a plant, known as the mallow that grows in marshes and damp areas of Europe, Asia and North Africa. The mention of it brings to mind a lush green tree with puffy confections on all the branches. Miniatures would peak out from between the leaves, waiting to grow. But it wasn’t quite that simple. Showing characteristic leadership, the ancient Egyptians ground up the mallow roots, mixed them with other substances, whipped air into the sticky mixture and ate it for medicinal purposes. Much later the French figured out that you could fill a deep tray with corn starch, make holes in it, and pour in the melted marshmallow mixture. When the centre cooled and the starch hardened on the exterior, you could lift out the marshmallows which now had a soft elastic skin. Even later the process was refined to exclude the mallow plant. Modern marshmallows are made by heating corn syrup with sugar and mixing it with dissolved gelatin. The gooey mass is then fed through an extruder. It emerges as a long tube which is subsequently cut into pieces and coated in cornstarch. Lawrence has never cared much for family parties. Any excuse to miss one would do. So I was taken by surprise when he said we ought to have a party on January 10, the first anniversary of David’s death, all the more proof that grief changes people in ways you’d never predict. “We need to have marshmallows,” he said, “And Safeway white cake with thick icing.” It sounded like just the sort of party you’d have for our sweet-loving David—just the sort of party you’d have with him. He’d be there for sure, celebrating with family and inhaling the sugar. I could feel the incongruity of such an event, having David absent yet somehow present at the same time. I wondered whether pieces of his favourite cake would mysteriously vanish when we weren’t looking. Lawrence bought the cake on his own, but he and I did the marshmallow shopping together. It was a task he would not take lightly. I could see that he must have shopped for marshmallows with his dad. He lifted the bags from the shelf and inhaled their sweet aroma. Only the freshest, softest, fluffiest specimens would do. Each marshmallow had to stack independently, never sticking to its neighbours. You could assess this by gently caressing the packages. We came away with two large bags that met all his specifications. Like Lawrence, I am prone to sentimentality these days, drawn to things that can bring David to life—if only in the imagination. Marshmallows had a double meaning in our family. David was our personal marshmallow. If you asked him to account for an act of kindness or generosity, he’d grin and say: “I’m a marshmallow.” That was the only explanation you’d get. It was I who first assigned the label to him. I believe I was angry at the time. “You are a marshmallow,” I bellowed, pointing an accusing finger in his direction. Just what it was that caused the outburst I cannot now recall. No doubt he had raised my hackles by caving in sweetly on some point of order with the children. Did he allow somebody to have dessert when I had specifically warned that there would be no dessert until the dinner plate was cleaned? Did he permit someone to go swimming without having cleaned up the bedroom clutter? Whatever it was that he had done, I wanted him to know that I expected a firmer approach. But in choosing the name I had made a serious miscalculation. Calling him a marshmallow as a shaming device was about as effective as accusing skating ice of being smooth, or blaming diamonds for sparkling. It was a compliment. He loved marshmallows, and if he was one of them, then he had found his tribe. He was proud to be a member. If he could keep them around the house long enough for baking, David used miniature marshmallows to make Rice Krispies squares. He was so good at it that our daughter Ruth asked him to make a Rice Krispies cake for her wedding. In preparation He shopped for four nested wedding cake pans, 2 pounds of butter, 104 cups of cereal and 8 large bags of fragrant, soft, perfect miniature marshmallows. In the hot days of summer we were both happy that Ruth was getting married and sad that she would be moving away. David wanted to choose the perfect time for the making of the cake--to ensure the freshness and also leave spare time in case things didn’t go as well as expected. July evenings in Alberta tend to be warm, lit by a brilliant sun that sets some time around 10:00 and leaves a long soft twilight. They lure you outside for walking and barbecuing and gardening. But now and then you get a series of scorching days, followed by an evening where the sky bruises to black, the rain hammers everything and lightning flashes in all four directions to the undulating beat of continuous thunder. It was on such a night, with the windows wide open to let in the fresh cooling breeze, that we set about the task of constructing the huge cake that would send our daughter off to spend a new life in Ontario. With the tempest raging outside and me acting as baker’s helper, we measured and melted marshmallows into puffy sticky clouds. Then we mixed, marvelling at the way things change. It would never have occurred to us to use Rice Krispies squares as a wedding cake. But the cake we were constructing on this stormy night would boldly grace Ruth’s head table, adorned with a spray of removable flowers. It would be cut generously at the wedding, and served on the spot. The guests would snap it up and go back for seconds. Ruth would proudly say, “My dad made that cake!” And so it came to pass, that on January 10, 2020, with Ruth and her family living in Ontario, Lawrence, Mark and their loved-ones settled at my dining room table to gorge on over-sized slices of thickly-frosted cake and unlimited quantities of marshmallows. With me occupying the chair at the head where David would have sat, we indulged in marshmallow nostalgia. Lawrence and Mark recalled the Christmas morning when Mark’s wife Tracey gave them marshmallow guns—yes, guns that shoot marshmallows. Reverting to joyous childhood, they were pulling the triggers and firing marshmallows at one another. “Those marshmallows go to the garbage,” I said. As they retrieved the spent ammunition from dusty corners David said, “Are you just going to throw them out? Could you not eat them?” Eating Marshmallows was one of David’s favourite pastimes. He ate them in the evenings while watching TV. He also ate them when we camped. We tended to camp simply, in the bush where you find the mosquitos. We didn’t generally have running water, and we never had a good supply of running water hot enough to melt the sticky marshmallowness off our fingers. If we used mosquito repellant the marshmallows would take on the flavour. If we didn’t, then we had to scratch at the bites with sticky fingers. You could cut down on the stickiness by clapping a toasted marshmallow between two cookies and calling it a smore. But a smore was more fattening than a plain roasted marshmallow eaten on its own. I don’t suppose it had occurred to David that marrying a blind woman would relegate him to a life of roasting marshmallows for two. “Blind people don’t roast marshmallows,” I told him the first time he handed me a roasting stick. Just to prove it, I torched the first three I tried. “Blow them out when they catch fire,’ he said. “Blind people don’t see the flames until it’s too late,” I said. Sighing in resignation, David settled into a pattern. He would eat one marshmallow raw, roast one for me, then roast one for himself. Every so often he’d over-roast one that had been intended for himself, and if he could blow the flame out before it blackened, he’d hand it to me. I never minded a little bit of ash. You can know a lot about eating marshmallows, and still have more to learn. Sitting at my table, remembering his dad, Lawrence rolled a marshmallow in icing from the Safeway cake. “Icing on a marshmallow?” we exclaimed. “Did David do that?” “I don’t think so,” said Lawrence. “But it’s good. I think he would have liked it.”

WRITING THE CHRISTMAS LETTER: 2019

“If you use the bad parts to get to the good parts you’ve done something good.” Elton John In the last week before Christmas I agonized over the production of a Christmas letter, the kind you add a personal sentence to, and send out to everybody who writes to you, and everybody you expect to get something from, even some people you don’t get anything from and haven’t for years. Back in November, when I carefully contemplated what to write in such a letter, I had decided not to write at all. That plan held up very well until a week before Christmas when people began writing to me. David and I used to co-produce a Christmas letter back in the days when it could be signed with both our names. I’d make a start some time in November, asking David what he thought we ought to write. He’d mention a few things. I would keep at it, adding and deleting, until I deemed it ready for proof-reading. David would correct the typing and add a thought or two. “That’s fine,” he’d say. “It’s ready to send.” Without David in the physical world, I believed the writing of my 2019 Christmas letter would be a solitary pursuit. But then, things got complicated. It seemed I was dealing with two versions of myself. There was the me who had decided to write a Christmas letter, and a reluctant woman sitting at my computer, refusing to press the keys. “How hard can it be to write a Christmas letter?” I said to the reluctant woman. “All you have to do is tell people what you did this year. Start at the beginning. Here. I’ll show you.” Pushing her aside, I wrote a paragraph. “David died on January 10,” I wrote. “His last few days were difficult because we often couldn’t understand what he wanted to say. But he was determined to be understood. He insisted that I immediately put money for 2019 into his tax free savings account.” He didn’t say, “You will have the money after I die if you put it in while I’m still alive.” But we both knew what he meant. He meant: “Go do it right now.” I showed my paragraph to the reluctant woman. She was outraged. “You can’t start a Christmas letter that way,” she scolded. So I pushed Delete and started over. “We were all saddened by David’s death at the beginning of the year,” I wrote. The reluctant woman stayed my hand. “That’s not entirely true,” she said. The truth is, you weren’t that sad because you thought it was time. You’re a lot sadder now than you were then. One of your favourite memories happened right after he died. Remember how you sat with him, marvelling at how his twisted tortured body had suddenly relaxed, how you lingered with him, holding his hand in absolute peace. That doesn’t sound very sad to me.” “Should I take it out then?” I asked her. “Yes,” she said. “Should I add the part about being peaceful at the end?” The reluctant woman was—well—reluctant. “Maybe you should skip David altogether and do what other people do. Try describing your grandchildren.” I pressed Delete and started over. “All five grandchildren make a project of delighting their Granny. Carys is a gymnast with a fondness for unicorns and Lewis can charm you while climbing on top of a table at lightning speed. Ben has learned to read in two languages, Evan builds something with Lego every morning before he goes to school, and Clara spent most of last week pretending to be a baby lion.” After that, I couldn’t think of another thing to say. So I wandered around the house, pouring cups of coffee, setting them down on various tables and losing track of them before I’d finished. “Come back here and finish this letter,” nagged the woman who had previously been sitting at my computer. “And don’t push the Delete key. This stuff about your grandchildren has potential. It just needs a little fluffing up. Take a break from that topic and tell them about your travels.” Feeling a little bit encouraged I wrote that I’d made four trips to Guelph, one to spirit River, one to Jasper and one to Vancouver. I spiced it up with some stories of cruising in French Polynesia. I was conscientious about naming people who had been there for me during my travels. Then I got up, searched the house, and used the microwave to warm the coffee from some of the abandoned cups. “Be happy,” I said to myself. When I sat down again I deliberately wrote about happy things. I wrote that I was happy to be living in my apartment, happy to be walking in my neighbourhood, to be playing bridge and going to exercise classes and writing for fun with new friends at the Joy of Writing Club. I wrote that I had joined two choirs. I mentioned that I still facilitated hope groups, having not quite completely retired from my work in hope studies. All of this was true, and my confidence grew—until it didn’t. In its place there came a tsunami of grief that sent me running to my bed where I howled in abject misery. “What now?” I cried out to the reluctant woman. “Do I have to quit, after all the work I’ve done?” “I don’t know,” she said. “But don’t push the delete button.” Instead of continuing the letter, I went back to the computer and read an on-line article in Psychology Today. “You can’t outrun grief,” the author boldly declared. The reluctant woman considered this. “You are the living proof of that,” she said to me. “Perhaps you should grieve a while. Maybe you’ll be able to finish the letter tomorrow.” In our forty-five years of marriage David and I read hundreds of Christmas letters. Some were funny. One relative always drew her year in cartoons. Another used the language of a medieval castle. Some were informative—births, marriages and such. Others were boring. Enough said about that. But there was one letter that chilled us so thoroughly to the bone that we had to turn to each other for comfort. It was a devastating life summary, sent by Cousin Lila. It was cloaked in sadness and despair. Her husband and all his siblings had Alzheimer disease. She wrote details about each of them. She ended the litany by wishing all of us a Merry Christmas. “Lila is depressed,” I said to David. He said, “Everything in this letter is probably true, but I wouldn’t send it at Christmas time.” With this in mind, I turned back to the reluctant woman. “I’m not Cousin Lila,” I said, “and I’m not Susie Sunshine either. I want to write a Christmas letter. Who am I?” anyway?” “You’re a grumpy, weepy, unpredictable griever living a basically happy life,” she said. And so it was that I found myself back at the computer the following morning, cleaning up my writing and developing an opening paragraph something I hoped would tell a truth that could reasonably be followed by Merry Christmas wishes. “It will be a different sort of Christmas this year. No doubt each of us will miss David in our own way, though it has been some time since we had a Christmas that wasn’t influenced by the need to accommodate illness. I would say that grief in my case is less a gradual process of healing over time and more a situation where kamikaze attacks occur when you are doing well in the big picture. I’ve been concentrating on learning new things, having fun and paying it forward as a tribute to the small army of people who have been lighting up my life over the past few years.” The reluctant woman and I checked it over with a critical eye. It was a longish letter, a little too perky, a little too busy. But the time had come to add personal greetings and send it anyway. Out went the copies, one by one. After so much dilly-dallying, I had expected to be pleased. Instead, I found myself turning apologetically to the memory of David. “I’m sorry that letter seems so cheerful,” I said to him. “I failed to mention how broken-hearted I am. They should be told that every fiber of my being still wishes you were here. I wanted to tell them how utterly bereft I get when I think that all my future Christmas letters will be written without you. How could I have edited it all out?” But the memory of David was remarkably unperturbed. “We couldn’t have sent such a letter,” was his response. “It’s not in our nature. If we couldn’t have said something good, we wouldn’t have said anything at all. But I do think you could have mentioned the tax-free savings money we put in my name back in January. You’ve had that money in savings for a whole year now. That’s $5,500 plus interest you won’t have to pay taxes on. It is an accomplishment worth celebrating.” “Too late for this Christmas letter,” I said. “That story will have to be written elsewhere.”

A POST FOR PASTOR BOB

“Hope is the YES to life” –Ronna Jevne I would have liked to celebrate my retirement at a glorious sunny garden party on a day of my own choosing. I would have liked to have left for Australia the following day with my healthy husband. Yet I cannot say that I would rather have been more pessimistic about the possibility than I was. Perhaps there wouldn’t have been much good in knowing That the unexpected closure of the Hope Foundation would derail my career in 2012 Or that multiple systems atrophy was already beginning to disable my husband in 2009 Or that I’d be a widow in 2019. Because there was always joy alongside the fear and sadness That haunted me during the period of my life when all the plans I had previously imagined became irrelevant. Some days I get a laugh by telling an audience that my hope presentations are proof that I am unsuccessfully retired. Some Saturday evenings I go to card parties where seven people play—three couples and me. Because sometimes I think that hope is more than the YES to life. It is the YES to possible lives in which some things we want must stand smiling beside other things we never wanted and probably never will.

AIRA

Family and friends helped me tremendously during the weeks and months after David’s death. But when it came to dealing with the mundane problems that confront blind and low vision people who live alone, Aira was there to ground me. Aira was my newest friend. Aira isn’t a single person, but rather a company dedicated to making information available so that blind and low vision people can do what they want to do. It’s name is an acronym for artificial intelligence remote access. Aira refers to its users as explorers. Before I became one, I’d never thought of myself as an explorer. But, given that explorers tend to be self-possessed individuals who boldly stretch their limits, I like the sound of that. Aira, according to its CEO, believes a key challenge behind blindness is not lack of vision, but lack of immediate access to visual information. The company is on a mission to provide instant access to information for anyone, anywhere, anytime. To make this happen, Aira connects blind and low vision people to human agents. The explorers have cameras, either on cell phones or on specially equipped glasses. The agents see the world through these cameras. They tell the explorers what they are seeing. At a glance, it may seem like splitting hairs to differentiate between lack of vision and lack of immediate access to visual information. But visual information is the thing most people get when they scan a recently arrived letter, or gaze at the traffic signal to see when permission to cross has been granted. You can live quite well without vision, but without access to visual information, your life is necessarily smaller than it ought to be. So much of your time and energy goes into getting that information. It saps your reserves. Perhaps that helps to explain why it pleased me to be designated by AIRA as an explorer. Explorers go after the fullness of life. Explorers get access to Aira services by purchasing time in minutes. I was extremely fortunate to have a friend who offered me some free introductory minutes at the moment when I most needed them. I was moving out of the nursing home suite I had shared with David, and back into the apartment we had purchased three-and-a-half years earlier. I would be living alone. There was no doubt that I would need some help. Take the fridge in my apartment, for example. On the front of it there is a touch screen that controls a lot of things. In fact, it does something whenever you touch it. The advantage of being able to see is that you can tell what it did, and what you have to do in order to undo whatever you accidentally did when you unintentionally touched it. I had a feeling you couldn’t actually turn the fridge off by laying a knuckle on its panel, but what if I was wrong? It was time to call Aira! Facing this unfriendly contraption, I aimed my iPhone threateningly at the fridge and made the call. In less than five seconds, a live human came on the line. “Hello Wendy. This is Amy. What would you like to do today?” I could think of a lot of things I’d like to do today, but I decided to stick with the problem at hand. “I’d like to read the screen on my fridge so I can figure out if I’ve made any changes that ought to be reversed.” “Okay. Hold the phone back a bit. Slant it upwards. There we are. If it’s okay with you, I’m going to take a picture with your camera and magnify it here so I can read the printing.” It doesn’t take us long to figure out that I have accidently switched on the light and turned the ice maker off. It only takes a few seconds for Amy to direct my fingers to the spots where corrections can be made. With the light turned off and the ice maker turned on, Amy’s off the phone and on to something else in less than two minutes. The problem is solved. Without Amy, I’d have had to ask somebody to come over. That time, instead of calling up my friend Bev with a plea to help with my fridge, I could call and invite her to join me on a walk. The move to the apartment presented many opportunities for the Aira agents to work with me. The daily mail delivered dozens of sympathy cards I could not read, and my kitchen, having been used by various guests during my stay with David at the nursing home, was cluttered with cans, jars and packages I could not identify. I wanted to know if my mirrors were clean. I needed the instructions on the package of pancake mix. On my way out to a meeting, I was unable to determine which room was 3-105 in the Education Building at the university. Aira agents gave all the information I needed using my phone camera Suman Kanuganti is one of Aira’s co-founders. He has great dreams for the company, and with good reason, since it has flourished. . It was founded in 2015. In 2017, it provided 20,000 hours of explorer-to-agent contact. It has partnered with companies in creative ways. Intuit now funds Aira services so that blind and low vision business owners can use its bookkeeping services and access its websites. Corporate sponsorships provide free Aira service to all users in 20 major United States airports and a national chain of pharmacies. These days, some explorers wear smart glasses with mounted cameras that can read the text on signs without the intervention of a human agent. As for me, I have dreams for Aira too. I imagine the day when I will be staying in a hotel. Instead of waiting for a sighted person to help me navigate the lobby, I’ll call up Aira and take an exploratory journey past the shops to the restaurant. I might even try to find a store in a large shopping mall. For now, I’m content to pay a monthly fee of $30 US for 30 minutes of Aira service. I can add extra minutes if I need them. For $129 I could get 300 minutes, but this is more time than I can reasonably use. Helping blind people get access to visual information is a major occupation of most sighted people who befriend those with blindness and low vision. Many of my blind friends live happily enough without Aira. They share their homes with sighted spouses who can see whether the mirror is clean or the fridge screen has been corrupted. They do not feel the need to use a cell phone for this type of visual information. In the past I would have been one of them. But family and friends are so much more than providers of information. We need them for all sorts of reasons. Aira has not turned me into a sighted person. It has not entirely replaced the sighted assistance I use to get so easily from David. But now, given the opportunity to assign the mundane tasks to my Aira agents, and the fun tasks to my human friends, I find the idea of living alone to be a little more appealing, a little less threatening than it was the last time I did it. I was twenty years old then. That was forty-five years ago.

GRIEF IS A MONSTER

Grief is a monster that springs in ambush when you are least prepared for it. It squeezes the life out of you until you can barely breathe. At least that’s what I’m noticing about grief these days. It’s a recent discovery. I’ve viewed it differently in the past. Monsters were distinctly absent from my prior encounters with grief. I used to experience grief as a heavy burden dragging backward from behind, like an ox cart throwing off hay bales maybe, or the red wagon the neighbourhood flyer delivery families used to pull down the street, lightening their load by dumping bulky catalogues in every mailbox. Or possibly grief was a tunnel with dark walls on the sides and a light at the far end where I might at last emerge, blinking in surprise after the long journey. These things I imagined in my days of smaller griefs. The opening for a bigger grief presented itself to me when my husband died near the beginning of darkest January. His death was not so much a sudden event, but rather the culmination of a long-entrenched process with a predetermined conclusion. Gone forever was my lover, my best friend, the man whose final concerns were driven by his wish that I might have a happy future. There I was, a widow after 45 years of happy marriage, waiting for the burden of grief to drag me back or the tunnel to close me in. But where was the burden? Where was the tunnel. Where was the sadness? I waited for the grief to happen. While I waited, I moved out of the nursing home where we had been sharing a suite. I bought four orchids to flourish in the wintry sun that slanted through my living room window. I sang as I cleaned my kitchen. I played Bridge with good friends and exercised at the YMCA. Now untethered from domestic care-giving obligations, I accepted all invitations to work, play and eat. But where was the burden? Where was the tunnel? Could the process of grieving really be dispensed with so easily? All around me were people who approached me cautiously, looking for signs of my bereavement. I told them all that I was doing fine. To those who seemed to want more I said, “You know, we lived together in a nursing home for the last two years. I am sad to lose him, but it is such a joy to be in my own place again, eating my own cooking, and living like an ordinary person.” It hardly seemed an adequate tribute. But I could offer no better accounting than that. February found me still smiling, serving Sunday dinners to family and friends. I ordered a humidifier for my apartment and booked flights to Ontario and Vancouver. Grieving in a recognizable configuration still had not begun. To people who asked how I was doing I said, “You know, we were close, and we went through nine years of continuous losses. At first he couldn’t skate and then he couldn’t take long walks. Then he couldn’t keep working and then he had to give up driving. Eventually he couldn’t operate the TV remote or feed himself. We mourned all those losses together. So I guess maybe my mourning was pretty much done by the time he died. .” There were days when my heart strings hummed with the tension of sadness, other days when I felt a twinge of longing for the life we had lived together. I greeted these symptoms with some relief. Still, it didn’t seem quite enough. “This is grief,” I said to myself, “And it is not so bad. Perhaps the fact that I am a basically happy person has served to protect me from the worst of it.” February, however, is a short month. March brought the much-anticipated opportunity to visit my beloved daughter and her family in Ontario. Ontario hadn’t seemed so far away when David was ill. Our daughter had made it her mission to be with us as often as possible. Now it was my turn to go to her. With joyful enthusiasm I packed a small bag. It had been a long time since I had been free to travel. I smiled all the way to the airport, joked my way through security and happily read a novel while we passed over the prairies and Northern Ontario. It wasn’t until the flight attendant announced the beginning of our descent that the monster first came for me. One minute I was fine. The next minute I wasn’t fine at all. My chest was tight. My throat was clogged. My body was acting beyond my control, sobs were shaking my shoulders and tears were pouring down my cheeks. I surrendered in bewilderment. At that particular moment there was no reason to be sad and I was sadder than I had ever been. Just across the tarmac, on the other side of a door three little blue-eyed blonds were tugging at their mother wondering; “When is Granny coming out?” I had longed to embrace them. Yet now, at the moment when this could be, my thoughts had retreated to a point back in history, the times when we used to talk about the grandchildren we would have some day. David and I were going to take those children camping. We were going to take them to the zoo. We were going to read to them together and take them to the library. Now David was not here for those things. I was still wiping my nose when I exited the airplane. Never had I felt more alone. Waiting to hug me, as I crossed the threshold, were the bouncingthe apples of my eye, the delights of my heart. So bereft was I that it took all the discipline I could muster to greet them with the enthusiasm I would have felt an hour earlier. Had it been even a little bit possible, I might have curled up on the floor of the arrivals area, clutching my knees to my heaving breast. “Fake it till you make it,” I said to myself. Faking it was the best I could do at the time. Fortunately I would be with them for six days—time enough to restore my equilibrium. Later, with only the memory of the emptiness to show for my sudden outburst, I patted myself on the back. “Now you have experienced grief,” I said. “You got through it all right. Return to the process of building a satisfying life.” So I bought a new piano and played it every morning. I registered at a seniors centre and joined a writing club. I chose spring bulbs and pots of pansies to grow on my balcony. March went out like a lamb. April brought me a plugged ear that required the attention of a doctor. I hadn’t seen this doctor since I left the nursing home. He used to come to our suite on Fridays. We’d worked closely together, giving the best care we could for David. Somehow we’d managed to maintain a cheery disposition and a stiff upper lip in the face of so much suffering and helplessness.. A plugged ear is much easier to fix than a neuro-degenerative illness. In the face of such a simple task I looked forward to telling him about my new piano, my plans for spring, the flowers I was growing. But as soon as he asked me how I was doing, the monster came out of nowhere and nailed me to the chair. I felt the tightening of my chest and my face refused to smile. I took a deep breath to calm myself. Clearly I was not going to be able to tell him about the new piano or the flowers. Acting on its own, with no permission from me, my mouth blurted, “Just sitting here with you is giving me PTSD. “Really?” he asked in surprise. “Really,” I said, for now I was back in the nursing home, trying to live one day at a time, trying not to wish away the together time that remained for David and me, wishing I could do more for him, wishing I could do it better. “That’s funny,” the doctor said. “Being here with you isn’t giving me PTSD.” This, I knew, was an invitation to let it go. The old familiar me would have laughed. The old familiar me would have told him about the pansies and the family dinners on Sundays. But with the monster gripping my neck all I could manage to say was: “I think it’s only my left ear, but you can check the right one.” And when I got home, clear-eared and heart-broken, I lay on my bed for hours, hugging my knees to my heaving breast. “Move past it,” I said to myself. “Forget the monster and go on with your life. Or maybe learn to keep an eye out so it’s not such a shock when it springs.” On my phone was a text from Alayne, inviting me to join her on a trip to the farmers’ market. Alayne was a friend of David’s, then later a friend of mine by association. In those last couple of years she continued to visit, came in the last few weeks knowing David would be unable to speak. I accepted her offer with trepidation, knowing myself to be vulnerable in a way I had not been before. If ever there was a good place for a monster to lie in wait, then that place was surely the farmers’ market, the very one where David and I had spent many joyful Saturday mornings in years gone by. We went so often that the vendors noticed our absences and asked why we’d been away. All my senses were on alert, waiting for the ambush that never came. This visit to the market was not quite like the others. None of the vendors remembered me. I’d been away that long. Nobody wondered how I was doing. With a tremulous awakening of confidence I picked up an opulent hydrangea, then a fragrant Easter lily. I snatched up a jar of my favourite Sauerkraut and added a bag of carrots. Into the mix I threw a package of jerk chicken sausages, fresh pita, hummus, and finally, a chocolate treat made from ground up crickets that I thought I’d take to entertain the unsuspecting snackers at the bridge club. Smiling triumphantly in my kitchen as I unpacked the load, I said, “Aha Monster. I fooled you, didn’t I? You thought you’d scare me away from the farmers’ market, and I went anyway.” But even as I said it, I began to suspect that this grief, which was neither a burden to be slowly unloaded, nor a tunnel with a light at the end, was a smarter-than-average monster. Smarter-than-average monsters are too smart to ambush you when you’re ready for them. They know enough to wait until you aren’t. With that in mind, as I plan my second trip to Ontario, I am hoping the monster never strikes twice in the same place.

GOOD-BYE TO NURSING HOME LIFE (Nursing Home Life, part 15)

“To everything there is a season” Ecclesiastes 3:1 A most extraordinary chapter in my life has come to an end. I have said good-bye to nursing home life. I am well. I am grateful. I am happy. I am wondering. I am grateful: that my city—edmonton—has a place, Laurier House where couples can make a home together when one member requires services provided in the public system for long-term care; that so many relatives and friends integrated time with us into their regular routines, gifting us withcomfort and laughter, the continuation of our past life into the present; That the staff of Laurier House were there to help as best they could, while their call system constantly summoned them to hurry out in service of others; That we had the financial resources to supplement the care at Laurier House by paying for extra care; That we were able to engage private care givers who would join me in caring for David as a treasured person—rare and precious; That we had the funds to purchase new wheelchairs as David’s needs changed and a computer that could speak for him when his own voice could not; That David was able to be with us to celebrate our 45th wedding anniversary, and Christmas with all five of our grandchildren, and Boxing Day with his sister and her family; That David was able to die at our home, in his own bed, attended by our son and the Laurier House staff; That we could keep him with us after death through the afternoon and evening, still warm and more relaxed than he had been in many years, while friends and family gathered in the spirit of a party around him; That more than 400 people attended his memorial and so many others sent messages saying they would like to have been there; That David and I were blessed with a shared enduring love strong enough to sustain us together from our late teens to official senior citizen status; That I could move out of Laurier House and back into the condo we had purchased in 2015, so that it would be there for me when the end came for David. I am happy to be cooking my own food, to be eating vegetables sautéed to crisp perfection, to be showering without wondering if a nurse will open the bathroom door. And inasmuch as I am happy to have moved out of Laurier House, I am even happier to be able to say that I stayed there until the end. I am wondering if I am done with nursing home life. Perhaps I will someday need such a place for my own care. And I am wondering how we could find it in ourselves to look seriously at nursing home life with an eye focused well above the minimum standards, so that they could be places where we ourselves would want to live. A home is more than a physical facility. It is a place where a person can feel precious. Feeling precious, when you are unable to care for yourself, happens when others have the time to care for you. Most of us won’t have a wife to move in with us, and many won’t have the money to hire extra help. Those of us who pay the bills through our taxes will need to set the standards now to provide the time, or risk being cared for later in a hurry.

THE MUSIC OF CHRISTMAS (Nursing Home Life, part 14)

“Mostly Christmas makes me feel” –Linnea Good Earlier on the blog I made a short list of songs I love to wallow by. But now that Christmas is coming, there are so many more songs. And what better time can there be for wallowing in sadness, nostalgia, joy and completely inexplicable reactions? It’s a musical bonanza, two of my best Christmas weeping songs presented consecutively on a single album, Winter Song by Sarah McLachlan. How magically transforming it is to lubricate the tear ducts with Sarah’s version of Joni Mitchell’s River, in preparation for the heart-breaking torrent of McLachlan’s own Winter Song! I could be tapping my toes to Brenda Lee’s Rockin’ Around the Christmas Tree. In fact, I do tap my toes when it comes on the radio, but when I want to play Christmas music, I Hear myself asking Siri to play Winter Song. It’s not nostalgia that draws me in, it’s the connection to feelings of sadness and loss, the self-indulgent tug toward a moment of melancholy against a backdrop of comfort and joy. . If, like me, you are a closet whiner,sad songs are the perfect outlet for expression. Fortunately, Christmas offers a wide selection of choices with something to meet every emotional need. For example, there’s Silent Night, the song that still holds the record as my biggest crying song. The whole thing started some time in my thirties. I don’t know how. I don’t know why. But every Christmas, I’d be at a concert or a church service and we’d start singing Silent Night. Before we got to sleeping in heavenly peace the beauty of the thing would overwhelm me. The rest of the singers would have to finish singing without me. I’d be sniffling, wiping tears, my throat stretched tighter than a drum. No more singing from me. No particular sadness in it. Here was nostalgia at its most pervasive. Each year that song would start, and I’d remember how I cried last year. The memory would set my glands to drizzling. The first cure for the problem came to me quite accidentally the year I volunteered to play the piano at the late church service on Christmas Eve. The stage was set for the worst of my crying. Near the end of the service the congregation would begin to sing Silent Night. They would pick up the tall candles they had been given when they entered the church. The lights would go down and the first candle would be lit. Then each person would light their candle from the candle of the person next to them. The beauty of the thing would overwhelm me. Normally I’d be a wet rag by the time all the candles were lit and the third verse was sung. But this time I was the musician and everyone was counting on me. The burden of responsibility calmed my nerves. It was a Christmas miracle! All the beauty and no tears from me. I played in heavenly peace. It worked, and I had high hopes for singing that song in the future. But it only worked when I played the piano for other singers. If I didn’t play, I still cried. Then came the second cure. It was the year when another pianist volunteered to play the late service. Members of my family were visiting that night. I packed my purse with Kleenex and invited them to join David and me. Each of us picked up a candle as we entered the church. Then, near the end of the service, Carla played the first notes of Silent Night. As the peaceful music began, my father, summoning the louder voice of a man who has forgotten his hearing aid, turned his candle toward my sister. “Where is your candle?” he boomed. “I don’t know,” she whispered. All was still calm at that point. “Where’s your candle?” he boomed more loudly, thinking perhaps she had not heard him. “I don’t know,’ she shouted back. We’d made it to Holy infant so tender and mild. Then began a scurrying search of the floor for the missing candle. By now we were at the second Silent night, Holy night. Quick as a flash, while shepherds quaked at the sight, I handed my candle to my father to give to my sister. “This is an extra one,” I shouted, hoping only to have to say it once, particularly because it was a lie. I wanted—no, needed—him to be quiet. At that point, all thoughts of crying had left me. I felt like a teen-ager, the way you do when you want to pretend that these people are weird strangers who just happened to cross your path. But my father is a conscientious man. That evening he was bent on making sure that everyone was included. “Where’s your candle?” he asked, glancing at my now empty hand. We had made it to the third Silent Night. At this point, my thoughts turned from utter embarrassment to sympathy for my poor David, the long-suffering man who had, in all innocence, married into this family. His only possible escape could come with a messy expensive divorce, and I just didn’t think he was up to it. I started breathing deeply, lest I should develop a penchant for fainting. I shook my head vehemently at David, who was offering to hand me his candle. “You keep it,” I whispered as loudly as I could. I didn’t trust myself to hold a fire in my trembling hand. Things settled down a bit then. My father stopped worrying about my candle. All was calm, until we got to the end of the song. We blew out our candles and then sat down. There was a snap! There was a soft cry of surprise. There was no point trying to pretend the noise wasn’t caused by my family. It was my sister, jumping up to retrieve the two halves of an unburned candle upon which she had just sat. Apparently it had been on her chair all along. Mercifully the service promised to end. The piano struck the first chords of Joy To The World. Beside me stood David, whom I now noticed, was taking deep breaths in a vain attempt to suppress fits of laughter. Of course the laughing attack spread to me, and then to others nearby, the way a wildfire might spread if you weren’t careful with a candle. Since then I have become philosophical and more than a little curious about the strange relationship between emotions and songs. Christmases come and Christmases go. Each holiday season brings its songs and its feelings. This year I’m choosing Sarah McLachlan for the melancholy effect. That said, I expect to hear Joy To The World, which will likely cause me to break out in a broad smile. And when I’m asked to sing Silent Night, I’ll do my best not to laugh. But I might not succeed in that.

NIGHT LIFE AT LAURIER HOUSE (Nursing home life, part 13)

Sometimes, in the middle of the night, I sleep in blissful peace. Sometimes, in the middle of the night, I hear David coughing. Sometimes, in the middle of the night, the snow plough cleans the parking lot outside my window. Sometimes, in the middle of the night, I wonder why I am so often too hot, or too cold. Is it my hormones? Sometimes, in the middle of the night, a night nurse bursts into song. “Would you like to ride in my beautiful balloon?” Sometimes, in the middle of the night, the lady down the hall screams: “Help me! Help me! Is it more effective than ringing the bell, especially in the middle of the night?” Sometimes, in the middle of the night, David calls my name from his bedroom and sometimes I hear his call. Sometimes, in the middle of the night, I remember what the doctor said when I asked him to prescribe a sleep aid. He said: “What is it that disturbs your sleep?” Sometimes, in the middle of the night, I read an entire book. Sometimes, in the middle of the night, I listen to the CBC morning show from Halifax. It ends at 5:30, Mountain Time. Sometimes, in the middle of the night, I am lulled by poetry and song on CKUA radio. Sometimes, in the middle of the night, I fight the temptation to get out of bed, get down on my knees, reach under the bed, and pull out the packages recently delivered by strangers. My daughter has sent them. Some of them are for me. I could just open them and see which ones are for me. Couldn’t I? Some time, in the middle of the night, I might just do that. After all, there are still 12 more nights to go before Christmas!

SHIFTING AND ROTATING (Nursing Home Life, part 12)

Institutional life has a rhythm. You fall into the groove of it after a while. It picks you up and carries you along. There are things you like and things you don’t. After a while, there are things you take for granted. Twenty-one months after we moved into Laurier House, I find that my emotions twist and turn with unwavering fidelity. I love every third Saturday, when an omelet is served at lunch. I un-love (hate is such a strong word!) every third Wednesday because the dining room will surely serve up plates of cabbage and corned beef. I’ve learned to savour many new flavours over the years, but I don’t think I’ll live long enough to acquire a passion for corned beef. At Laurier House culinary variety pivots on a 21-day rotation. Twice a year they shake up the rotation. Through it all, the cabbage and corned beef has remained. Staffing also has a rhythm, less predictable on a small scale, more so for those of us who’ve been here a while. I’ve taken a particular liking to the evening shift every second month. To be clear, it’s one of four shifts of staff that meet David’s on a daily basis. There’s night, morning and afternoon in addition to evening. The rotations on the other three shifts work differently, though I’m not sure just how. For now, in the interest of simplicity, let’s stick with the one I’ve figured out. You might want to skip the next few lines if you don’t like numbers, or if shifting and rotating makes you dizzy. Laurier House has approximately 80 residents and is divided geographically into four sections. We are on first floor, east wing. Every two months the evening staff move to a different section. They rotate in this fashion until each team has served all four sections. Then they return, eight months after the last time they returned. We are currently experiencing our 11th version of this rotation so we are seeing some staff for the third time. Given that this is their third exposure, they should be able to use their previous experience to show them how to care for David. But wait! David changes a lot in the time it takes to complete a full rotation. Each time they rotate through, they see a different version. His needs are more specific and his ability to express them more limited. David was able to stand up the first time they helped him. He was still eating in the dining room on their second rotation. This time, they are bringing our supper and turning him in bed. Each shift rotation brings a cast of characters, some working full time, some part time and some casuals. New people keep popping through our door, wondering what to do. The process of retraining goes on for a while. I like the second month of every rotation because, by the time a month of trial and error has passed, the care-givers have figured out how to help David. The current crew is learning that David wants his heels on a pillow, his left elbow on a pillow and his head on two pillows. They know that his pills need to be crushed and he can no longer tolerate cranberry juice. They know how to brush his teeth without causing him to choke on the liquid. They know that the shirts he loved to wear at bedtime the last time they knew him have been replaced by hospital gowns. They learn by doing. On the first half of each rotation, David is an experimental phenomenon. On the second month of each rotation he is a person they know how to care for, someone familiar and special. Living an institutional life presents us with many opportunities to second guess. It’s easy to complain about things you can’t control. In general I try to avoid it. On the emotional roller-coaster I ride here at Laurier House I sometimes find it difficult to tell which issues should be addressed and which should be ignored. Take the cabbage and corned beef, for example. It’s presence on the menu affected us differently. David likes corned beef. This is his big chance to have it on a regular basis. You can bet I never cooked it for him. What kind of wife would I be if I asked to have it removed? But then there is the issue of staff rotation. My views on the subject are guided by emotion. I keep remembering the dislocation we felt during the first few weeks of our stay here, and how we began to feel more at home as care-givers came to understand David’s needs. I also recall my disappointed surprise when, without warning, a cast of untrained characters replaced the familiar ones and started the process of dislocation all over again. I hoped I would come to accept these changes as an institutional necessity, possibly an inconvenience. I had hoped I would get used to re-experiencing the feeling of being strangers here. But I never have. Home in this phase of our lives is a suite in long-term care, where we watch David’s health slide slowly with dozens of care-givers shifting and rotating around us. we have met many care-givers who are generally interested in doing the best work they can do. Familiarity with the best possible job appears to breed empathy, competence and loyalty. I feel sad that the system is so obviously organized to discourage familiarity because those who are familiar with David’s needs are so much more capable of making him happy. I appreciate the second month of every two, when familiarity on the evening shift takes the place of experimentation. I dream of a system that would value familiarity, a place where the staff wouldn’t rotate, where David would only be served by familiar staff on four shifts, maybe as few as three shifts! I like to think it could happen, and would happen if only the people who organize our systems understood how it feels to be helped so uncertainly so often by so many. But now, accepting things as they are, I care for my own mental health by making a point of noticing the day on which the reassigned care-givers cross the bridge from uncertainty to familiarity. “Will you be back tomorrow?” I ask them hopefully. In the up and down rhythm of institutional life, it’s a good day when they say they will.

NORMAL (Nursing Home Life, part 11)

Feeding a pureed supper to David in bed is one of the jobs I’ve taken on here at Laurier House. Given the choice, he would prefer to be chewing his food, feeding himself with a fork and sitting anywhere other than in bed. Butt here he is. I am feeding him because he chose me for the job. Being chosen for this task is one of many surprises in my current life. My previous puree experiences occurred nearly four decades ago when our children were babies. In preparation for parenthood I had read a book that suggested the need for a blind feeder to locate the mouth of the fed-one with one hand and hold the spoon with the other. I tried it on Baby Mark. Mark, at a tender age, had yet to achieve a command of language. Despite this barrier, he was clearly able to communicate. He responded to my first attempt by making a rule for living: Never allow yourself to be spoon fed by a blind person! Here was his reasoning, so far as I could understand it at the time. “A blind person wielding a feeding instrument is a dangerous character. Trapped in your high chair at the mercy of such a person, you could lose an eye, snort peas into your nose, or later find yourself fishing chicken out of an ear. At the very least you might get a sloppy chin. Fortunately for Mark and the siblings who followed him, mothers are known for their ability to understand the wishes of their babies. The situation might have posed a problem were it not for the fact that David was quite willing to feed the children whenever feeding was required. I responded with benign acceptance. Apparently it never occurred to me to assert my competence, or my right to be treated equally as a mother. I did not feel slighted or rejected, and if I felt any regret I have forgotten it. The question of my using cutlery to feed anybody was laid to rest. It rested in peace for nearly four decades. We moved to Laurier House in preparation for the time when I would require significant help in order to meet David’s needs. That said, it would have been difficult to predict in advance which needs would be met by the staff and which would be met by me. Choices have been made at various points along the way. David is a fully-informed adult, definitely not a baby. So when I give him a choice about something, I try to ensure that it is a real choice. I recall the way we used to present choices to our two-year-olds when we were trying to rush out of the door in the mornings, already at risk of being late for work. : “Shall I put your shoes on now, or in fifteen seconds? Shall I start with this shoe or the other shoe?” So perhaps I ought to confess that it was a little disingenuous for me to ask a question when I never doubted what the answer would be. In my mind, there was only one choice. Nonetheless, I asked the question. “Would you rather be fed in bed by me or by the staff?” “You,: he said. “Me?” I said. I thought I must have misunderstood. “You,” he said. I didn’t ask for an explanation. It seemed wise to assume his choice was motivated by love. “Shall I use a spoon or a fork?” I queried, blundering uncertainly through this uncharted territory. “Spoon,’ he said. No doubt about that answer. The man still values his eyes and recognizes that his nose is more vulnerable to a misdirected fork. I see now that there was wisdom in the book I consulted so long ago. If you are a blind person who has been chosen to feed another person you can use one hand to find a mouth and the other to guide a spoon. A bib and a cloth will help you compensate for any errors you might make. This is our latest version of having dinner together at home in this unlikely place. I feed David while we watch the 5:00 news. And where are the children whose mother never fed them from a fork or a spoon? Well, just the other night Mark brought two of our grandchildren to stay with us while he tooke their mother to dinner. He brought food for them. The youngest of Mark’s children is Baby Lewis. Baby Lewis doesn’t talk yet, but his mouth is sporting two beautifully sharp teeth. I positioned his little chair near David’s bed. There he sat, scooping fries into his fists, using his built-in blades to saw them off. While he ate, he watched me use two hands to feed Granddad with a spoon. His sister Carys sat nearby, two-and-a-half years older and a thousand times wiser. The nurse who brought David’s puffer seemed a bit surprised to find us there, but to the four of us, everything seemed quite normal.

EATING IN THE BEDROOM (Nursing Home Life, part 10)

There were a few absolutes when it came to my mother. There was, for example, ‘don’t bite the bottom off of an ice cream cone.” It was a warning, not a response. So I tried it once at a community picnic on the steps of Cambridge school. The results were—unpleasant! Sticky ice cream dribbled down my legs and settled on the steps. Neighbours began to shout for help. Mother appeared. “I told you not to do that,” she scolded. I believe this was my first true public humiliation. A second absolute proved to be just as wise, and not quite so publicly embarrassing. “Never go to bed with gum in your mouth,” she warned. I didn’t get breakfast the morning after I tried that. Mother used the time to cut the gum out of my hair. I still had time to catch the school bus. When people said, “You got a haircut,” I simply nodded. I tested both these absolutes in early childhood. It took me longer to test another. “Never eat in bed,’ said my mother. It would have been difficult for me to eat in my bed even if I’d wanted to. Somehow I would have had to get food without her knowing, sneak it past her and carry it all the way upstairs. I believe this absolute remained untested until the winter of 1973, when I paid a spring-break visit to my boyfriend David who was studying at Acadia University in Wolfville NS. On that brief vacation, the act of eating in bed seemed insignificant compared with other rules that were falling by the wayside. For example: “No girls allowed in the boys’ residence” and “Never sleep with a man until after your wedding.” In the heady confusion of all this disobedience, can you blame me for forgetting my mother’s long-ago given advice about eating in bed? At that time downtown Wolfville was served by an IGA grocery store. It was impossible to enter that store without succumbing to the fragrant seduction of the cinnamon sugar doughnuts rolling hot and fresh off the conveyer belt. Can you blame us for failing to consider what the consequences might be if we ate them in David’s bed? When advising my children, I was more specific than my mother had been. I said: “Never bite the bottom off an ice cream cone because the ice cream will pour out and you will be made to clean up the ness.” To my children I said: “Never go to bed with gum in your mouth because if you do, it will tangle in your hair and I will have to give you a haircut.” To my children I said: “Never take cinnamon sugar doughnuts to bed. The sugar granules are most uncomfortable to lie on.” By that time, the practice of sharing a bed before marriage was so widely accepted that it hardly bore mentioning, and I hesitated to launch a detailed conversation about the experience of rolling around on a bed of sugar granules. All of this came back to my mind when I read the message my iPhone delivered from my good friend Rob on the second day of December in 2018. “David and Wendy: Thank you for a really nice evening together. I think we should always have bedroom meals. Much more comfortable than formal dining rooms.” Oh, what would my mother have said? Perhaps I ought to say a word or two about the evening that prompted the note, though it seems a shame to muddy the truth of a story by presenting the facts. Rob Jennifer and I had spent the evening sitting around a card table at the foot of David’s bed, drinking two kinds of wine while eating brie and tortiere with mango chutney. David had already dined on a plate of pureed something-or-other from the Laurier House dining room and a glass of thickened water. We weren’t quite as insensitive as it seems. Even when David was able to sit at formal tables with the rest of us, he never cared for any meat wrapped in pastry, and he has declined all offers of thickened wine since the first time he tried a little of it on a teaspoon. In addition to the other provisions, Rob and Jennifer had also brought a carton of his favourite Christmas ice cream. All four of us enjoyed a bowl of that and delighted in an evening of love and laughter. Neither sugar granules nor any other traces of food were left in David’s bed. It is possible that a future archaeologist, unearthing an iPhone might misunderstand the simple message from rob. So I wanted to clear up any remaining ambiguity here. That’s my story, and I’m sticking to it.

VISITS FROM THE DENTIST (Nursing Home Life, part 9)

Our dentist came by the other day. It was his second visit to our suite at Laurier House. The first time he came he launched his customary social chat before looking in David’s mouth. It was a one-sided chat. David thinks very clearly, but says very little these days. “It feels awkward talking at you instead of having a real conversation,” Scott said to David. I laughed. “Isn’t this what dentists do all day, conduct one-sided conversations with people whose mouths are immobilized?” “I guess so,’ he said. “But this is a bit different.” I was relieved at his honesty. I’ve noticed that there seems to be a curious relationship between being open about discomfort and being willing to persist in spite of it. On this second visit, he adjusted David’s bed to a favourable position, looked in David’s mouth and painted his future cavities with a compound designed to protect them from further deterioration. Then he showed me how to check for infections and offered to borrow space in a wheel chair accessible dental clinic if serious dental work was required. . He said he’d be back in four months. “Thank you for coming here,” I said. It felt like understatement to me. It seemed such an inadequate response, given that Laurier House is not convenient to his office or his home. “I wanted to do it,” he replied. I didn’t doubt that he meant it. He knows how important dental work has been to David. In the days when he was independent, David would never have missed a check-up, or passed up an opportunity to improve his dental health. Scott has been our family dentist for ten years or so. He’s been a partner on this journey. We never asked him to come to Laurier House. He simply volunteered to do it when I told him that David wasn’t able to get out to see a dentist. He first knew David as someone who wanted a 7:00 AM appointment so he could squeeze dental work in the time between an early morning six-mile run and a punctual appearance at the office. Then came the time when every visit showed us how Multiple systems Atrophy had changed David’s body in the six months since the last. The Journey to care for David’s teeth has continually been hampered by obstacles and problems that needed solutions. I remember how the small spaces around Scott’s dentist’s chair seemed to shrink when David started using a walker, then shrank beyond recognition when we had to take the wheelchair into the office and use the walker as a support to help him transfer from one chair to the other. It was Scott who suggested that we start taking David to a wheelchair accessible office. This meant changing dentists, and we tried that. But David wanted Scott. So we compensated by taking two men to every appointment to assist with David’s transfer. It was Scott who suggested that we hydrate David’s mouth to keep his teeth healthier. That was several years ago. It worked then. On this visit we told Scott that we now use drops to dehydrate David’s mouth to keep the fluid from building up in his chest. He shrugged sadly and said he’d do the best he could in the circumstances. Sometimes this journey through David’s progressive illness feels a bit like one of those hop on hop off city tours we used to take. There are many stops along the way. People get on. People get off. There really aren’t words to describe how grateful I am to those who stay with it, for David or for me. They have to be tough enough to witness the slow and painful progression. They have to be confident enough to do things they can do and humble enough to avoid being overwhelmed by the things they cannot fix. In return, David and I do our best to be cheerful and positive, but we’re not exactly fun to be around, and it’s quite some time since we’ve been in a good position to return a favour. I try to remember to be amazed at the number of people who stay with us in spite of their freedom to go. I will not likely be able to pay them all back, but perhaps I will have a chance to pay some of it forward.

BOREDOM AND THE TALE OF THE SALT FAIRY (Nursing Home Life part 8)

They were decorating pumpkins down in the dining room the first time I noticed it. It was just a few little crumbs on my kitchen counter beside the sink. “Could have come from anywhere,’ I thought. They were passing out Hallowe’en candy down in the dining room the second time I noticed it. It was just a few crumbs on my kitchen counter. “Maybe I didn’t clean them up properly last time,” I thought. “Could it be some toxic residue falling from the ceiling tiles?” I wondered, the third time I noticed it. So I licked a grain off my finger and waited to die. But all I tasted was table salt. “I must be spilling it when I salt David’s morning egg,” I concluded, the next time I noticed it. And from that time on, I made sure to salt David’s egg on the kitchen table. And yet, once in a while, there would still be grains on the counter. “Must be the salt fairy,” I decided the next time I found it. I looked up “salt fairy” on the Internet. The Internet did not disappoint. It provided a book of fairy tales about salt. These tales are much like other fairy tales in nature. Poor girls are turned to princesses because of salt. Tears turn to pearls because of salt. One of the tales tells of a mill that forever grinds salt because nobody knows how to make it stop. That particular mill has sunk to the bottom of the ocean, salting the waters forever. But if there could be one such mill, might there be two? “There must be a magic salt mill in here,” I concluded, “and maybe a fairy to turn it.” Since every fairy needs a tale, I set out to craft one. THE TALE OF THE SALT FAIRY By Wendy Edey Once upon a time there was a not-quite-old-enough-and-too-healthy woman who lived in a nursing home where she helped to take care of her husband. On certain days, at certain times, she was very, very bored. “I’m bored,” she whined. From far away in a distant land, a fairy god mother heard her wails and came down to help. “Read more books,” she suggested. For she had been a real mother before she became a fairy. “Boring,” said the woman. “Watch more TV then,” she suggested. It wasn’t her favourite option, but it would do. “Boring!” said the woman. Now she was at her wits end. “Play Bingo in the dining room,” she suggested. “Boring, boring, boring!!!” cried the woman. One day the fairy god mother got an idea. “I will create a mystery for this woman to ponder,” she whispered to herself. “That will keep her from being bored.” Fairy god mother set to work on a plan. Some mornings, not every morning, but just some mornings, she picked up her enchanted salt mill and sprinkled a few grains of salt on the kitchen counter. And the woman, now occupied by the process of wondering how the salt came to be there, stopped being bored and lived happily ever after. That should have been the end of it. Nothing ever happens in fairy tales once they’ve lived happily ever after. But every morning at 10:00, one of the nurses comes in to crush pills and feed them to David. One morning the nurse on duty brought a nurse in training. “Take the salt shaker off that shelf there and bang it down on the pills,” she said. “Then put the salt shaker exactly where you found it, in case Wendy is looking for it.” And even now, I don’t think she understands that when she bangs the salt shaker on the pills to crush them, a few grains leap in the air and escape through the top. And even though there is now a new theory to explain the few grains of salt on the kitchen counter, I’m sticking to my story about the salt fairy.

WAITING (Nursing Home Life, part 7)

I have never been much good at waiting, but when it is necessary, I prefer to wait for good things—Christmas, tooth fairy, the arrival of spring. Being a person of privilege and a hope lady too, I find I’ve had little experience figuring out what you can do while you wait for bad things to happen. The experience I have comes from way back. There was this one time, the Saturday morning of the May long weekend, back in 1973. David and I set out for a drive on the highway in his mother’s white Mustang. The sunny sparkling day was perfect. I was still a teen-ager then with my boyfriend by my side. The weekend stretched before us with the promise of my mother’s cooking waiting for our arrival. Nothing could go wrong. But then something did. David saw that the car ahead of us had come to a complete stop. “Hold on,’ he cried, taking the car out of gear and slamming on the brakes. We skidded, and we skidded, and then we stopped, just short of the car in front. We had cheated disaster. It was a tremendous relief. But then it wasn’t. From behind us came the squeal of brakes and a growing vision of blue that filled the rear view mirror. From inside David’s mother’s mustang came a mind-numbing realization. Without warning we had been plunged into limbo. We were in great danger, and there wasn’t a thing we could do about it except wait for as long as it would take for a bad thing to happen. Reason tells me that we only waited a few seconds to be catapulted from behind into the back of the stationary car in front. Memory tells me otherwise. How many years did I age while we sat there filling our heads with that terrible screeching? Was it an hour, a day, a lifetime? And what did I do while I waited? Did I utter words of undying love to David? Did I write a book, compose a song, plan my career, strike a bargain with God? Memory tells me I did none of these things. I simply waited, and waited, and waited, feeling powerless. In that circumstance, there was nothing else that could have been done. These days I find myself here at Laurier House with David, healthy and able, loved and fed. It wouldn’t be bad at all were it not for the fact that together we are once again waiting indefinitely for a bad thing to happen. This time the waiting is much longer. The very length of it gets to me. With more time to spend, it becomes more difficult to sink into the comforting anesthesia of powerlessness. “Do something!” says a nagging voice from deep within. “Do whatever it is that you can do.” Some mornings when I rise, sleepy-eyed, contemplating the stretching of the endless day, I stand by David’s bed, dripping thickened water into his mouth, trying to conjure a picture of the woman I hope to be. She’s my hero and I am hoping that having the picture will help me be more like her. The woman I hope to be is serene. She has long ago accepted the inevitability of her husband’s death and the unstoppable decline towards it. She does not strain to control that which is beyond her control. The woman I hope to be is vigilant. She reads the latest research. She studies her situation and notices improvements need to be made. She keeps records and asks questions. The woman I hope to be is gracious. She is not the sort who, losing her temper, would snap at an irritating inexperienced care-giver: “Would you just be quiet so we can hear what David is trying to tell us!” The woman I hope to be is creative. She has the smarts to figure out how to get things done. Just suppose he wants to watch The Good Wife on Netflix. Suppose his hands are too rigid to operate the remote. If blindness renders her unable to read the screen, and his speech is so slurred that she can’t tell whether he is telling her to press Up, Down or Okay. She will find some way around that. The woman I hope to be has a sense of humour. Once she has figured a way of getting The Good Wife on the screen, she will linger with him, listening to the voices of those cut-throat glamorous women, wondering which of them she would need to copy in order to be a good wife. The woman I hope to be sleeps more peacefully, exercises more vigorously, plays more music, eats more healthily, laughs more heartily appreciates more gratefully, gives more generously. She reads better books, phones lonely people, delights in the antics of her grandchildren and listens patiently to the troubles of others. She writes and writes and writes until finally she gets something that can be published on her blog. Doing all of this leaves her barely enough time to contemplate the difficulties involved in waiting for a bad thing to happen. The woman I hope to be occasionally shows up to help me out. When she’s here, I do better.

WALLOWING (Nursing Home Life part 6)

We had a pig named Nellie on the farm where, in my childhood, I spent many happy outdoor days. Nellie’s sole purpose in life, from the human perspective, was to produce litters of piglets who could later be repurposed as bacon and pork chops. Nellie’s purpose as a living thing, however, appeared to lie in the art of wallowing. Nellie took the art of wallowing very seriously. If you spilled a trickle of water while filling her trough, if it rained, Nellie would indulge herself in a magnificent wallow. She would dig in her snout, twist her body and roll in the mud, cavorting side to side, grunting a dirty song of ecstasy. My father said she was cooling her skin. Even on cool days, Nellie apparently had hot skin. Wallowing, when pigs do it, is likely a much-admired activity, admired by other pigs. In humans, wallowing is also an art form, though not so much admired by fellow humans. Rarely do we speak of wallowing in joy, or achievement. Humans are said to wallow in self-pity or sadness. The implication is that the wallowing is self-indulgent and should cease as soon as possible, possibly before ever beginning. I have, for most of my life ascribed to this view. I’ve never been one to support wallowing in the sad, self-indulgent sense, so it surprises me to see how much of it I do here at Laurier House. Perhaps I have too much time on my hands, or maybe there isn’t any way to be mostly happy when your primary occupation is the care of a beloved person who is steadily losing every ability except the ability to be aware. I used to think that sadness could be fenced in, contained to a finite period of time and eventually wiped out by generous doses of happiness. I had, in fact, been quite successful in subduing it. My first experience with taking charge of sadness came just before the dawn of my teenhood when I left the farm to attend the Jericho Hill School for the Blind in Vancouver. Shortly after my arrival there, homesickness seized me and shook me by the neck for weeks. Every now and then I would raise my head and notice that other kids seemed to like it fine there. They were laughing at jokes, playing records and gossiping about each other. Having noticed their happiness, I would retreat to my pillow and cry for an hour or so. This went on through September until finally, chapped and exhausted, I set myself a crying schedule in which I planned to cry for a shorter period each day until I would eventually reach a dry-eyed day. With less time allotted for crying, my naturally gregarious and fun-loving self was able to take over. Similar applications of self-discipline prevented prolonged periods of wallowing during stormy days of teenhood, young adulthood, and the onset of middle age. Thus, when I moved with David into Laurier House at the age of 63, I presumed that feelings of sadness and self-pity would be dispatched once I had my bearings. Getting my bearings as a healthy nursing home dweller has been disappointingly complicated. The most positive thing I can say about dealing with sad feelings after nineteen months of living here is that I am learning to live with them, to accommodate their erratic behavior the way I learned to accept the quirks of the various roommates who shared my spaces back in boarding school days. This is a compromise made necessary by the fact that these rogue emotions have resisted my determined efforts to relegate them to obscurity. I have consulted a counsellor and a doctor; affirmed my main purpose at this stage of life; attended exercise classes and taken regular long walks alone and with friends; confided in family members; made adjustments in routine;; compared my circumstances favourably with the hardships faced by tens of millions of humans exiled in refugee camps; established friendships with Laurier House residents and some of the staff; taken a short vacation; enlisted help so that I could go out more; inhaled an extra glass of wine when friends have brought dinner; befriended a visiting cat; told my troubles to an imaginary friend; sent gratitude notes at Thanksgiving and celebrated the presence of bacon at Sunday breakfasts. In addition, I have traded much of the time I might have spent sleeping for time spent reading—thereby consuming a list of books that would strike pride in the heart of any bibliophile. At the end of it all I am left with joy, love, hope, gratitude, sorrow, worry, dread and the unshakable hunch that nothing I do will ever be quite enough. All of this is contained within the boundaries of commitment and loyalty that keep me where I am, living in a nursing home, doing the intimate caring things I do for a partner who used to do things for me. Though I don’t doubt the possibility of a happy future, there is no framework that allows me to plan for it. In this unfamiliar state, I am easy prey for every bad feeling that offers itself up for the taking. If there is a difference between sadnesses of the past and present then it is surely this: emotions in this phase have become inextricably tangled together, so that one emotion cannot be replaced by another. Where once my happiness would have been David’s happiness, now it tends to be his sadness, or at the very least, a great inconvenience. Am I delighted to savour delicious food in a pleasant restaurant? Well, sort of, as long as I don’t remember that David was fed nursing home puree from a spoon while lying in bed. Do I eagerly anticipate a concert performance? Well sort of, except that David always feels vulnerable when I am out. Happiness in greater amounts does not replace sadness the way it used to. In some cases, having more happiness means having more sadness. And what is a person to do with the sadness when your main purpose at the stage is to be with someone you love? Perhaps there has been a time when, above the cacophony of emotions competing for my attention, I have been summoned by a still small voice asking: “What would Nellie do?” The answer to the question is, of course, indisputable. Whether happy or sad, Nellie would wallow—wallow with passion and unbridled determination to cool her skin. But wallowing is not as easy for humans as it is for pigs, especially us gregarious, fun-loving types. Our friends and family find it off-putting. Nobody likes a whiner. That said, there are other ways of wallowing. Back in my counselling days, clients used to tell me that they relieved their misery by crying in sad movies. They selectively attended the movies most likely to elicit tears and sobs. It seemed to fly in the face of the cheering up imperative, but for them it worked. As for me, I’ve opted for music to wallow by. To this end I have shamelessly indulged in hours spent with: Superman song by Crash Test Dummies—a true anthem to those who carry on despite the presence of injustice; Falling Down Blue by Blue Rodeo—an ode to the relentless onslaught of grief; I Guess That’s Why They call It The Blues by Elton John—a nod to ecstasy no longer experienced; Killing Me softly by Roberta Flack—heart twisting lyrics; and my current favourite, Angel by Sarah McLachlan. Sarah McLachlan waits patiently in my iPhone these days. She can be coaxed out through the earbuds anywhere, anytime: while washing dishes, or writing this blog, or even on the bus. How blissful it is to lose track of everything in the lilt of her soaring voice, the mournful anchor of the strings, the simple piano elegance! Here is a song penned from a place of pain. The singer lies in a hotel room, trying to sleep amid the wakefulness of a racing mind. She has declared herself not good enough, longed for a beautiful release, and pleaded to be carried off in the arms of an angel. Then suddenly she is struck with a bolt of wisdom. “It don’t make no difference Escaping one last time. It’s easier to believe In this sweet madness Oh this glorious sadness That brings me to my knees.” What’s that you say, Sarah? Sweet madness! Glorious sadness! Words to wallow by if I ever did hear any. And what do these twisted lyrics bring me but happiness in wallowing, as a human no less. It’s confusing to say the least, but Nellie would likely support that.

BEING PRIVATE (Nursing Home Life part 5)

The first thing I lost when I moved to Laurier House was my privacy. Funny, but this came as a bit of a shock. We hadn’t been here more than a couple of hours when privacy first reported itself missing. I needed the bathroom, which was in David’s bedroom, segregated by a sliding door. I went into the bedroom, entered the bathroom, slid the door closed and searched for the lock. Not finding it, I searched again. There was no lock. “Of course there is no lock, you idiot,” said a small clear voice in my head. “This is a nursing home! Staff have to have access in order to help the patients. Staff need access in order to wash their hands. Prepare yourself to live without locking the bathroom door.” Learning to live that way put a whole new meaning on the idea of hurry. It was important to always be on guard. Lingering on the toilet became a luxury I could not afford. I refined the process of rapid elimination, and I never failed to listen carefully when I went. Bathing was an occupation I carefully scheduled by setting my alarm after observing the staff activities and projecting the times when they were least likely to pay us a visit. Before I continue, I must stop to explain that nobody who works at Laurier House ever enters a suite without knocking. There is respect for privacy, in an institutional sort of way. They knock, tap tap, and then they enter. It is the same for all of them, RN’s, LPN’s care givers, housekeepers, managers, occupational therapists, physiotherapists, dieticians and even doctors knock, tap tap, and then they enter. If they don’t see you in the living room, they look for you. The knock is not a request for permission, but merely a warning. One second you are alone, and the next second you have company. How do you tell the difference between a visitor and a Laurier House staff member? Visitors wait for permission to enter. In a place where very few residents can get up to open the door, this is the way it has to be. I live at Laurier House, but technically I am not a resident. In institutional terms I am a companion to David who is a resident. In life terms, I am a wife. We have a kitchenette, a living room, two bedrooms and a bathroom that has no lock. Staff come in and go out when we are playing bridge, celebrating a grandchild’s birthday or watching a movie. I can’t say that this time in an institution hasn’t changed me. Clearly it has. Now that we’ve been here for nineteen months, my memory of what it means to have privacy has dimmed a bit. My passion for playfulness has also dimmed. Still there are times when my old silly self surfaces. On nights when the impulse to spontaneity overwhelms me, I wait until the staff have repositioned David, give them a few minutes grace in case they want to return for some item they left behind, then make a mad dash out of my bedroom, through the living room, into David’s bedroom and into the bathroom with more skin showing than I would want anyone other than David to see. I leave the sliding door open, just to prove to myself that I have the power. Then I relish the victory once I’m back in bed. Like all people who gradually become accustomed to institutional life, I lose track of the ways in which I have accommodated to its peculiarities. The other day, when one of the nurses asked me if I get tired of having so many people come in all day long, I had to think for a moment in order to understand his meaning. Was he suggesting that I wouldn’t want to see him? Of course I wanted him there. He was helping to look after David. But then it occurred to me that he was wondering if I felt invaded. “Privacy was the first thing to go when I came to Laurier House,” I told him. “I just try to keep my clothes on.” He laughed. I laughed. It seemed like a laughing matter. Laughing about this comes easily now. But I can’t say it always did. In the first few months of our time here the lack of privacy irritated me, simmering just below the surface. The simmer reached the boil the day after David’s first health crisis at Laurier House. As simmering feelings so often do, it boiled over on an unsuspecting victim. The health crisis developed about three months after we moved in. It was late in the evening, so we didn’t consult the physician who regularly visited David on Friday afternoons. The nurse followed a protocol and we left in an ambulance. I returned to Laurier House late the following evening. David’s fever remained high, and he was still in excruciating pain, but he was finally moving from the Emergency room into a bed on a ward. His brother had come to stay with him so that I could go home and get some sleep. It felt strange to be spending a night in a nursing home without David, but my clothes were there along with most possessions that were important to me. Home is where your stuff is. As I walked down the vacant hallway, stilled with the sounds of night, pausing only to let the staff know I had returned, a tantalizing thought seized my exhausted mind. “David is gone. Tonight I am an ordinary person at home. I will have complete privacy,” I said to myself. “I will take a bath without worrying that somebody will come in. I will even leave the bathroom door open just to prove that I can.” And so it came to pass that I ran the bath, turned off the water, and was just about to step into the tub when I heard a friendly “Hello!” It was not coming from the outer suite door. With the water running I had missed that first one. It was right at David’s bedroom door, and it was not one of the nurses, but rather David’s doctor, our regular Friday afternoon visitor. He had done what he always did, knocked and entered. What choice had I but to scramble into clothes at lightning speed and meet him in the kitchen? There was, at that point, an opportunity for me to respond in kind to a gesture of genuine concern, for it was only concern that had brought him through the door. He had come to Laurier House for some other reason and had taken an extra moment to ask me about David. But the conversation we might have had was doomed from the start. For I was angry, the way you are angry when you have been robbed, perhaps not solely of a peaceful bath, but of so many other things you thought would be yours. And I was tired, too tired to hide it. He, to his credit, despite the lateness of the hour, was able to see past that.